Friday, June 27, 2008

Just when I thought that we were going to get through a week without an appointment, Logan ends up with a drippy, goooy ear. Yes, another ear infection. This is his third since his tubes were put in, in January. He never had an infection before the tubes (they were put in to drain fluid affecting his hearing) and I thought the tubes prevented infections! So he is suffering from outdoor allergies and this new infection. Poor guy! I was hoping summer would be free of sickness.

Tuesday, June 24, 2008

Logan is so funny when he sits up by himself. Everytime he does it he raises his arms! And of course, we cheer, but he is doing it so often now that I feel bad when I miss it. He raises his arms and looks around for praise anyway. Check him out in action! (He just started doing this last week!)

Monday, June 23, 2008

Sunday, we attended the Down Syndrome Association of Wisconsin 5th Annual Brewers Outing. We meet some great families and had a lot of fun with the kids. I wish I had taken some pictures of the people we met, but I felt funny asking them if I could take their picture. Hopefully we will see some of them next year.

Wednesday, June 18, 2008

When I was taking Logan to the doctor the other day I had a flash back to about a year ago. I remembered what it was like to take Logan to the doctor in the first few weeks after he was born. I remembered crying most of the way there because I was dreading what the doctor would say. I feared more bad news and I couldn't take anymore. I felt like I had gotten enough bad news to last a lifetime after Logan's birth. I wonder now what the doctor though of me then...I must have looked horrible. I was a mess. Then I would cry all the way home just because of the stress of it all. Even though the doctor was very nice and tried to avoid anything negative, we had to discuss Logan as he was and what was in his future.

Now, doctor visits are so different. I feel confident (most of the time) that I have Logan's health under control and I look forward to showing him off. The nurses and his doctor love seeing him and always have great things to say about how he is doing. A year ago I would have never thought I would ever enjoy a doctor visit.

In reality, we had it easy when Logan was born. He was born with very minimal health problems. I remind myself that things could be much harder, especially when I am feeling sorry for myself while I'm taking care of Logan's health issues. Those parents who go through so much more are the strongest people I know. They are my inspiration.

Logan is changing really fast!Here is what he is doing and working on...

OT: He is getting better and better at playing with toys. He even gets a little rough with toys, which is great. Toys have also become very motivating for him to get him moving. OT will also be helping with self feeding soon.

PT: He can go from belly to sit with very little help. (EDIT: YES, he can sit up all by himself!) He also is up on all fours a lot and even went forward a little a couple of times. He is also a great stander when you stand him next to his toy table. He wants to pull up on things, but has not been able to yet without help.

SPT: He has quickly went from being a not so good eater to being able to eat almost any table food. He was struggling with keeping food in his mouth and chewing, but he is all of the sudden doing GREAT with it. He is willing to try new foods and now we are trying to get him to drink from an open cup and from a straw. The drinking and also self feeding are going to be our new challenges, but he is always surprising me, so I think he will surprise us all soon!

Besides that stuff he is a super happy little boy. Even when he is suffering from his allergies he is in a good mood. He loves to talk and laugh. His favorite sound is BA-BA and he loves to make noises blowing with his hand over his mouth. He has started creeping into my lap and trying to climb up on me (this is my FAVORITE thing that he does!), which is so darn cute. He loves to swing and ride in his stroller. I also loves to sit on grass or sand and pick it up and hold it in his hands. He also can do "SO BIG" when asked.

OMG! Just as I was typing this Logan sat up, from being on his belly, all by himself!!! He is SO AMAZING!!!! PT said once he mastered that, crawling would be next. OH MY!! Mr Amazing!

Monday, June 16, 2008

Logan enjoyed turning 13 months and also enjoyed Father's Day by spending a lot of time with Dad over the weekend! Logan watched his first parade (first that he could enjoy)! The big fire trucks were very loud, but other than that he loved all of the lights and music.

Logan loves playing silly spitting games with Daddy. Not something you should encourage, but it is SO cute!

Thursday, June 12, 2008

Well, we went to the ped this afternoon. When the doctor came into the room, he thought we were there for possible allergies. I had to tell him I was told to come in ASAP because of the result of Logan's thyroid test. Right away, he said that he did not remember the number being too high or low. He looked through Logan's file and found that it did go up...from 4.?? to 6.??, but it was not outside the normal range. He thinks that the nurse misunderstood and thought that we needed to come in, but instead he just wanted to retest at 15 months. He apparently couldn't find the note that said I was contacted and needed to come in. He did feel bad and wished he could figure out which nurse had made the mistake. So, we drove 70 miles total for nothing, but we got good news, for now anyway, about his thyroid. We did end up getting a prescription for Claritin for his allergies and the doctor got to see how miserable he is. He will have to be on his neb treatments and claritin and hopefully he will be feeling better. Thank God for mileage reimbursement!!!

We are headed to the Pediatrician this afternoon because Logan's 12 month thyroid test came back abnormal....that's all I know at this time. The nurse just told me that he needed to be seen ASAP. Sad story...I found out about the abnormal test by asking about it when I called to ask about outdoor allergies that I believe Logan is suffering from right now. He had the blood drawn for the thyroid test a month ago!! And when I called yesterday with a question about allergies I just thought I would ask because the nurse had Logan's file in front of her. She said that a note was made that I was contacted last Friday with the results!! NO! I was not contacted!! What if I had not asked??? This is not the first time that the communication at this office has not been good. I don't know that I will put up with it much longer. Are all doctors and nurses so disorganized?? I love Logan's Ped, but he and his staff need to not be so forgetful and disorganized. Once again, I feel like it is all my responsibility to get the care Logan needs.Thyroid Update to come....

Wednesday, June 11, 2008

Monday, June 9, 2008

This past weekend we went out of town for a wedding. We only knew the bride a groom and a few other people. It's been very rare for us to go where we don't know many people (besides shopping), since Logan has been born. I have to say it was interesting and an experience I had been fearing for a while. In reading other blogs, I have come across other's experiences with strangers making comments out loud about their child with DS. I hoped it would NEVER happen to me, but it's too late. Logan and I got a lot of stares at the wedding. Long double takes, which I have to say is not new, but the conversations I overheard were what bothered me. We were just sitting after the meal at our table and behind us I overheard a couple talking. One word jumped out at me, amniocentesis. I then tried to listen, and they were talking about a couple who had a DS scare during a pregnancy. The conversation ended with "everything ended fine though, thank God!". I thought to myself, good for them!, yeah right. Another time we were walking past a group of people back to our table when one of the women saw me coming and said to her friend "she's coming" and their conversation stopped immediately.

I hope that from now on I'm not going to shy away from places where people don't know us. Our family and friends and even people in our town are great about what they say to us and around us.

I have found that either people stare and avoid you or they want to talk to you. These outgoing people want to tell you about a child or adult they know of with DS. Most of the time I don't mind talking to them.

I wanted to also share some cute pics and a video from our weekend. I discovered Logan loves sand and that he loves water even more than I thought. Every time we walked away from the water he twisted his body back towards it. He even didn't mind if the water was cold. I also found out that Devin is even braver than I thought. He concurred a huge water slide.

Enjoy...

Logan still loves to swing.

Devin did the big steps down to the beach all by himself...and went back up too!

Logan, enjoying the sun!

Logan loved to pick up sand...never put it in his mouth!

My boys having fun!

Logan wasn't sure about he cold water at first.So wet, he had to lose the shirt! We were just going to dip our toes in.

Friday, June 6, 2008

This morning, Logan had his swallow study. It was really a cinch (especially since I couldn't even go in the room with Logan and his Dad because of the whole radiation and being pregnant thing). To describe it, they mix barium with water (in his bottle) and then some of his baby food and watch him swallow it with an x-ray machine. (I got to watch the DVD of it afterwards) It turns out he does have some penetration of thin liquids against his airway or opening to the lungs when he swallows (not every time, but some of the time), but the liquid did not aspirate into his lungs. So that is great news! It is likely that he has aspirated some when he was very little, which could explain the coughing and gargly sounds after he nursed. They gave us some tips on how to avoid situations that could cause him to aspirate, like avoiding sippy cups and straws (oh my!) and thickening liquids. Also, having him drink his bottles sitting upright. We had already started working on straw drinking (no success yet), but now we were told to use an open cup to avoid his airway being open when he drinks (which is what happens when you drink from a straw).I had a feeling Logan would do well because most of the symptoms of possible aspiration had gone away, but I wanted to make sure he was doing ok. I guess as his muscles get stronger he will get better and better at handling liquids.

I didn't anticipate how much patience it was going to take to feed Logan. It can be exhausting. He eats very slowly and his food has to be prepared just right so that it will stay in his mouth. He also doesn't eat very much at each meal. He rarely finished a jar or serving and I'm not sure if he tires easily, if he just gets full, or if he doesn't like what he is eating. We also have had no luck drinking other than from a bottle. Besides moving to table food, drinking from an open cup will be our next big challenge. Logan is not one for change. I have found him to be a bit stubborn, so I can't force anything on him or he will just resist more. We have to take baby steps!